Thursday, September 24, 2015

Dynamite or Curtains

It has been over a year since I've updated this blog. I've never been a particularly gregarious person, generally I am quiet and keep to myself. I started this blog in 2008 because I couldn't find a single YAC voice out there in the internet ether that matched my own. No one was sharing their story openly, honestly, in a way that might help fellow young cancer warriors prepare for their own fight. I created what I needed to exist at that time. Now there are thousands of YAC blogs, twitters, tumblrs and instagrammers candidly sharing their respective journeys. I felt my voice was no longer needed. Plus, I was in remission after four cancers and desperately trying to rebuild a normal life, yet again. In the interim I worked freelance art production with some amazing artists, and planned a new series of photographs and sculpture centered around themes of healing and renewal. After two years of remission I was finally allowing myself to consider healing, to consider the future.

And then the headaches started.

The first one, early this summer around my 30th birthday, I assumed to be a migraine. Though I'd never experienced a migraine in my life, I knew from friends that they often came with light sensitivity and could be intense enough to leave one bed-bound. This headache did just that. But it resolved by the next day, and when I had another one a few weeks later, I popped some Exedrin and thought nothing of it.

... Until they got worse.

The day-long headaches turned into weekend migraine marathons that kept me in bed in a pitch-black room. The pain was so severe it caused me nausea and vomiting. And then, just as suddenly as it came on, it was gone again. After a few months of these gut-wrenching brain-aches progressively getting worse, I gave in and went to the ER for a CT scan and MRI. Doctors soon told me I had a mass on my pituitary gland that was pressing on my optic nerve. The neurologist reassured me that pituitary adenomas are benign and extremely common, especially in women. He confidently proclaimed that my migraines were a separate issue and had nothing to due with the mass. Now, if you know my history, you know how many times I have been misdiagnosed (like the time Bellevue doctors told me my giant lung tumor was a hernia), so of course I knew he was full of shit immediately. Problem is, you're still at the mercy of your doctors, so I had to wait three weeks before being re-scanned. By that time the headaches had become constant and I can honestly say it was the most intense pain I have ever experienced. So, I was relieved when the neurologist frantically called me after my scan, telling me to come to the ER immediately.

Turns out the mass had grown, which means cancer. They wouldn't know the type of cancer until after the surgery-- they thought it would likely be ovarian or thyroid (both of which I have had, and have hormones controlled by the pituitary). The dark horse in this race was good 'ol Ewing's Sarcoma-- though they had never heard of it setting up shop in the pituitary, it was possible. Just very, very unlikely.

For the surgery they went up my nose and drilled a hole in the back of my sinus cavity. They removed 75% of my tumor, while the remaining 25% was left in-tact because it surrounded my delicate optic nerves. The neurologist said I was very, very close to losing my eyesight permanently. It's amazing how lucky I've been in these strange, small ways throughout the years, amidst so much misfortune.

Surgery was terrible and painful, but I healed without complication and started immediately on 6 weeks of radiation, of which I have only two days left. Brain radiation has left me incredibly tired, nauseous, weak, and forgetful. My hair is falling out, but not noticeably to anyone else, thank god.

So... is it a boy? Is it a girl? No,  it's Ewing's!

Now that my very aggressive and deadly bone cancer has come back for a third time, I don't have many options. It is almost a certainty that it will kill me. There is one regimen of chemo left that might prolong my life, but of course chemo is absolute hell, and I am on my own here in NY with no family or husband to take care of me. I'm not entirely sure I can handle it on my own, for the third time. So now I am trying to decide what the rest of my short life will look like: do I stay in NY? take a break to feel healthy and enjoy myself before chemo? Or start right away to maximize my chances of remission? Should I move back to CA where I have family to take care of me? Should I be planning my death? How should I spend the rest of the life I have left? All questions swirling in my head, all questions I might never have an answer to, until life unfolds.

One of my favorite books is a little known novel by Jack London called The Star Rover. I discovered it two years ago, right as I was beginning my last remission. It has nothing to do with the outdoors or adventure, at least not in the physical sense. It's about a man in solitary confinement who is forced to endure torture in a straight-jacket for months at a time, weakened and sensory-deprived. He learns to project himself outside of his body and through time to past lives that he recounts in vivid vignettes. With this meditation he escapes the jacket and is able to survive, mentally and physically, torture that would normally kill a man. I related to this novel on such a deep level, because his description of solitary and torture in the jacket is so, so much like going through intense chemo and illness. The man in the book is being tortured because the warden suspects he has hidden dynamite somewhere (he hasn't, of course, he is our enlightened protagonist and remains truthful). The Warden doesn't believe him and tries to kill him several times, all unsuccessfully. Throughout the book the Warden says the phrase, "Dynamite or Curtains", and he echoes back, "Dynamite or Curtains". I think of this saying often and have adopted it as a battle cry: I can either accept the extraordinary, the spark of life, the fire, or I can accept death. I will always choose the former.






38 comments:

Tink said...

Kaylin,

Though I do not have cancer & we live completely different lives, I admire your bravery to move across country to fulfill your dreams while still facing battles both during cancer & remissions. I have a progressively fatal neuromuscular disease called mitochondrial myopathy & was able to move away myself for a short while before having to return home because I could no longer take care of myself. That part I can empathize with - trying to decide what to give up, which path will be easier. I pray that you are able to find what is best for you. �� Your writing, like your art, is very profound with a dash of whimsy & very enjoyable. I pray also that you will be able to keep this blog updated when you feel up to it. I'm so sorry that your migraines were not simply that, but am thankful your eyesight was spared. Whichever path you choose, please know what a big difference you have made & will continue to make. I'm thankful for the few times we have exchanged words & look forward to your next blog entry �� I pray your Drs will be able to provide you with appropriate pain control measures during this as pain in itself can be so exhausting. (I will be going to my own Dr in a couple weeks to see what he can do for me as they are not quite ready for radical measures yet but what they are doing is no longer containing the pain to a tolerable degree, it's part of having mito but the Drs do not understand exactly why the disease causes so much pain beyond the cells & nerves dying). Praying for you as you continue to make these decisions as I know there will be harder ones in the future. ��

Much love,
Katie

Caroline said...

Kaylin - I was concerned when I hadn't read your blog in a while and am glad to hear you are still here. I have been a reader since its beginning in 2008 I think. I started my cancer blog in 2007 at my second diagnosis. Cancer sucks.

I had my first diagnosis at 19 and my second at 45 which means I am way older than you. However as my first diagnosis occurred at such a young age and in a time when cancer was the killer it used to be. I started making these cancer decisions at a young age. 2 years after my cancer diagnosis, I went to Europe to study and travel for six months. This was before the internet, cell phones, etc and basically I took my pill supply and set off. It was probably the best thing I ever did because it was me saying to myself 'cancer is not going to take any enjoyment out of my life'.

If I was faced with the knowledge that cancer was going to kill me later as opposed to sooner, I would live for my dreams and do what I want. Can you answer the questions - 'What do you really want to do?'. I am not saying this is time to pull out the proverbial bucket list, but this is a time to make a decision on what would be most enjoyable to you?

Maybe travel and seeing all your friends around the world while you still can? Or go find a cabin in the mountains or on the ocean and watch the sun rise and set daily for a while? What would give you the most enjoyment in life? I would find what is my happy place and stay there as long as I could.

Hugs to you! Caroline

Lauren in GA said...

This sounds so trite...but I am really grateful that you are blogging again. I will continue to pray for you. I keep trying to think of something that I hope will be of comfort...but ultimately I just want you to know that you have helped a great many people with your honesty. We really do love you. I am so sorry for the intense pain. I'm sorry that you have to make such impossibly hard decisions. I know you aren't asking for advice...but I just want you to feel the most comfort and uplift. Go home to your mother and sister...let them love you and care for you.

Love you,
Lauren

Anonymous said...

You are so strong. Thank you for being you!

lyndziimonster said...

you have always inspired me. though we have not met, and probably never will, you are often in my thoughts and prayers. you are beautiful, strong , and resilient. thank you for your honest mind. thank you for your humor. thank you for being you. whatever you choose, i wish you nothing but happiness and bliss. though i am only human and don't poses the power to change the world, i will always listen to your story and be a friend of you ever feel alone.

always,
lyndzii

Jeremy Impson said...

I'm sorry.

Anonymous said...

Thanks for sharing your story. I know everyone reading is pulling for you to beat Ewings once again. My hope for you is that you will be allowed to remain in NYC, your adopted home, and that you will be taken care of and not have to go through it alone. Don't hesitant to ask for what you need. Someone will be able to provide it. I'm not Catholic, but if I were the Pope, I would kiss your forehead, and do an air cross over you.
Blessings upon you...

Anonymous said...

I hope you will find a choice that brings you the most peace and happiness possible. It has been my experience that when that diagnosis comes where the Dr's give little to no hope, it is in your best interest to get hospice involved for the best pain control options and to not choose chemo which in many cases takes away any quality of life you can have. Hopefully, the operation and radiation keeps the tumor at bay so you have less headaches and can have your best creative journey throughout the end of your journey here. I truly believe there is another amazing journey coming Kaylin. You are amazing person.

LaVerne said...

Kaylin, I'm so sad to hear cancer has reared its ugly head again. It's not fair and it's not funny. I love your blog, your stories, your humor, your drawings, your cancer comic book. You have been an inspiration to me. I've had cancer twice, but my experience was not as bad as yours has been. You helped me get through my illness and I wish we could all help you get through yours. Whatever you do, I pray you have peace and live as pain-free as possible.

With Love,
LaVerne

Obsessedwithlife said...

As a fellow sarcoma (Askin's Tumor) survivor and have dealt with many relapses and near-misses with death, I'm thinking of you lots. Thanks for sharing. I, too, have gone back to blogging after a long hiatus...seems to help sometimes!

David, NYC said...

With you. Cancer in NYC. They should let us cut coffee lines, night club rope lines, and stay after museums kick everyone else out. This disease can't take away your fight. My fight is sometimes all I have. My fight is enough on the dark days. My fight is like dynamite.

June Armstrong said...

Kaylin, I am so sorry to read this, your immense suffering is unimaginable. I am amazed you can still come out fighting and to be able to write with such honesty and eloquence is such a gift. I hope you will go home to be wrapped up in love and surrounded by your family to take care of you, that is what you deserve. Blessings x

Casey Rampollard said...

As a Ewings "survivor" (I hate that word) my heart goes out to you Kaylin. Having been diagnosed with two more cancers since my Ewings battle I understand the grief you are facing. There is nothing quite like that feeling of disappointment (for lack of a better word) when your body lets you down. You have demonstrated such immense inner strength and resolve already that I have no doubt you will fight this demon. Don't despair and remember that you have so many people all over the world sending you their prayers and well wishes.

Jaap Dekkinga said...

Kaylin, here another stranger, I am so very sorry to hear your cancer came back. I am a cancer survivor myself, 8 yrs running now. You have some hard choices to make. An (probably unwanted) tip, a good friend of mine who had cancer and no treatment options anymore, planned his funeral so he could fully focus on living his life. Best wishes and let me know when you're in DC

Aly B said...

I've been staring at this empty comment box, at a loss for words. I wish I could say something that you haven't heard a thousand times something that could bring you comfort. All I know is you are a badass.

I can't imagine what the years of fighting has been like, despite following your blog. My hope for you is that you can find happiness and joy despite this terrible (to understate it) news. Sending so much love your way <3

Aly B said...

I've been staring at this empty comment box, at a loss for words. I wish I could say something that you haven't heard a thousand times something that could bring you comfort. All I know is you are a badass.

I can't imagine what the years of fighting has been like, despite following your blog. My hope for you is that you can find happiness and joy despite this terrible (to understate it) news. Sending so much love your way <3

Sharon Welch said...

Hi Kaylin,
I just read your blog yesterday and had no words to say. You are a totally amazing young lady and so very strong! Your writing is amazing. I say dynamite and living for the gusto!!
I shared a small amount of your story at Bible Study and asked the ladies to pray for you!! My prayers are with you too. I just want to let you know that I love you very much!!
You Rock my lovely Niece!!
Love Aunt Sharon

Anonymous said...

Kaylin, I first "met" you on world of Jenks and since thought of you often. We lost my brother to Ewings in 2008, he was, 22, and 19 when diagnosed. Your fight has un-deniably been excruciating and I admire your strength so very much. You have so much to proud of yourself for, I'm not a stalker lol, but I do try to keep up with you just because of the rare Ewings. Please stay strong, I'm praying for you please contact me sbgarcia30@yahoo.com

B said...

Kaylin,
It even feels strange to address you by your first name, when we have never met and I can't pretend to know you and your story in a substantial enough way.
So, instead,

Dear Madame Dynamite,
You are fire,
Stung by kerosine another time.
You are burned,
Imagine the heat required to burn fire
Others would not be so strong
Extinguishing is not the only option
Light candles around yourself,
Hand one to your mom,
one to your sister,
some to your friends,
Let them help light your way
Whichever way it is
There is no wrong way.
Madame Fire, you are oxygen combusting into beauty and power, you breathe out the carbon that builds sequoias over hundreds of years.
You are hundreds of years. You are trees and candles and fire itself, you are more than this kerosine blanket tying you up.
Burn brightly
Let the candles guide your path
Remember the sequoias, the seeds that only germinate after wildfire
there is creation here.
Emit.

On a less poetic note, know you are loved, you know the best option for yourself, just focus on your kaylin self. And know, there is no right way, only a way. It is all okay. Even when it's not.

On a more tangible note, I sincerely and deeply appreciate your writing, it is beautiful and helpful and thoughtful and honest. Thank you. Thank you. Thank you.

Karen Macklin said...

I stumbled upon this blog accidentally, and was so moved by your last post that I wanted to send you a little bit of love from a total stranger. Only you know what is the best way to move forward at this time, and I trust you will follow your intuition. My hope is that you use the dynamite to burn through your most difficult days and emotions, and put up some lovely curtains to remind you that the closing of one thing always means the opportunity to turn toward something else. My thoughts are with you. Karen

shaan said...

Man, fuck Cecil Winwood.

Ragnar Lodbrog rules, however. Probably an ancestor of Bob Loblaw.

Juliette said...

Hi Kaylin, I found you through Andrew Jenk's show. You are such an awesome, lovable person. I love your humor, your vulnerability, your talent and your sense of style. It breaks my heart you've had to suffer so much. You have so much to offer this world. I've had some whopper trials of my own. I have loved ones who were able to heal from their cancer including my father-in-law, and I know a lot of people think it's just snake oil, but I have personally reversed several of my own debilitating diseases. I can't have a clear conscious without telling you about Chris Beat Cancer, Chris Carr (who stars in the documentary Crazy, Sexy Cancer), Robert Young (who wrote the Ph Miracle for cancer). Find them on facebook or Google their blogs. And there are many others. People who had cancer that was so advanced, they were sent home to die, given only weeks or months to live. They discovered these alternatives and have not only healed, but have thrived and lived years and decades longer. Look up The Truth About Cancer on Youtube. Anyway, I wish you luck with whatever path you choose. You are loved by many. -Juliette

ERIN DUNN said...

Hi I just wanted you to know I lost my mom 3 months ago from cancer but before I did my mom and I feel in love with you on mtv. She fought hard for your comic book shirt I truly feel you helped her live as long as she did. She pictured her clinical trial like little pac man eating her cancer a way it worked for a long time. When she was diagnosed it was at a stage 4. I'm thankful for the extra time I got to spend with her. You are in my thoughts and prayers and I hope you get to spend time with your family. Much love. Thank you for all that you do.

ERIN DUNN said...

Hi I just wanted you to know I lost my mom 3 months ago from cancer but before I did my mom and I feel in love with you on mtv. She fought hard for your comic book shirt I truly feel you helped her live as long as she did. She pictured her clinical trial like little pac man eating her cancer a way it worked for a long time. When she was diagnosed it was at a stage 4. I'm thankful for the extra time I got to spend with her. You are in my thoughts and prayers and I hope you get to spend time with your family. Much love. Thank you for all that you do.

Deborah said...

I am beyond sorry. You are loved. Your life matters. You are a brilliant star. Lifting you in prayer for strength, clarity, and discernment for all the decisions ahead of you. Life IS worth living until the last breath out. Hallowed Ground. I have stood on Hallowed Ground with my husband. I have felt the angels that surrounded him. I experienced the Holiness of helping him transition from death into life. May you be surrounded by love. In the end, only love remains.

Sending you all my love on the wings of a desert sparrow,
Deborah

Anonymous said...

Kick cancer in the ass Kaylin and say fuck you asshole! You can totally do it.

kaylin andres said...

@shaan-- hah!! everyone wants to be ragnar. email me!

@ERIN DUNN-- so sweet to hear the comic helped your mom in some small way. amazing. my love to both of you & glad you got to spend as much time as you could with her <3

kaylin andres said...

@Aunt Sharon-- love you & will try to make it to xmas this year!


to everyone else-- i wish this format would let me reply individually but that you for the comments & love!

Anonymous said...


Thinking of you during this holiday season. You are such a talented, caring, and gifted person. All my best wishes and hopes for you during the coming year.
Kathleen

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